New Research Center

There is a new research center being set up. I cannot express how great this makes me feel. I hope that God guides their hands as they research.

Read about it here.
http://www.ohio.com/news/top-stories/ua-researchers-engineer-better-treatment-for-brain-disorder-1.316233#.T-o4VITeZxI.facebook

Insomnia

I can't sleep .... Mr. Chiari how I loath you

The puppy came back

I had found a puppy about three weeks ago. We found her a home and we thought things were going great. Well I get a phone call yesterday and turns out it was biting the ladies dachsund in play but he wasn't taking it that way so we have the puppy back. We cannot afford another dog so looks like I will be listing it back on craigslist to hopefully find it's forever home. Wish me luck

Causes of Chiari

I had a question about the causes of Chiari from a guest and I will try to answer that here.

Cerebrospinal Fluid Issues
Altered CSF dynamics "push" brain out of skull. For example, hydrocephalus,intracranial hypertension.

Small Posterior Fossa
Back of the skull is too small for the normal sized brain. May be most the common.

Tethered Cord (very controversial)
Abnormal anchoring of the spinal cord at the base leads to herniation, also causes symptoms of its own.

Other causes

Acquired due to a mass in the brain or Spina Bifida. Genetics have also been mentioned.

Research has identified more than 100 families with multiple affected members, implying that at least some cases are genetic in origin. However, it is not known what percent of cases are, what genes are involved, and there is no genetic test for Chiari.

Chiari is more common than many people think. Conquer Chiari estimates that 1 in 1,000 people have Chiari, which translates to 300,000 people in the US alone. According to the American Association of Neurological Surgeons, there are over 10,000 Chiari surgeries each year.

Each person's Chiari experience is unique- It is impossible for others to completely understand what you are going through; look for validation within yourself.

There are two options; take control or be controlled – Be proactive, educate yourself, and trust your instincts

Rough Night

Talk about a rough night last night. My children just wouldn't go to bed. Finally got the boys in bed around 10 and hubby came home about 1030 and took our daughter out to the living room. My meds were in my backpack so I took one and went to sleep and tossed and turned all night. This morning I have woken up to blurry vision. (thank you high school teacher that taught me the home row key :) I am dizzy this morning and I am wondering if a weather change is coming because that is normally when I have these symptoms. I really need to call my neurologist back and find out what is going on. My kids are up and eating ceral and my daughter is jumping to her hearts content. I will be getting down to business today and get some homework done. Did I mention I have 5 classes this semester for my Clinical Medical Assistant degree. All of you have a blessed day.

Never give up, Never Surrender, Fight for a Cure!

Wish I had my meds

Tonight is the second night of this killer migraine. Just wishing I could find my meds. We went on a trip to my parents last week and now I cannot find them I really feel like screaming. The boys don't want to go to bed and that's all I want to do is sleep.

Symptoms

Chiari has a wide ranging, diverse set of symptoms and affects everyone differently. Research shows that 95% of patients experience at least 5 symptoms. (see Symptoms Below)

Of these symptoms I have the severe headaches, the pain in the neck and shoulders, loss of motor control, weakness, stiffness and pain in arms and legs, balance issues and numbness in my hands and feet.

Life

This is my philosophy. You are your own person leave everyone else out of your feelings. Don't let them make you upset because it serves no purpose

Been To Long

Sorry it has been so long since my last update. Lets see I left off right after my surgery so let me fill you in on what has been going on since then. Well my pregnancy began a little scary since I was pregnant when they did the surgery we weren't sure if our little bean would be ok. We had monthly ultrasounds and bean was growing normally until Christmas Eve when I began to spot. I was about 18 weeks and scared. I got the best news and my Christmas present early. Not only was our bean healthy but also a bouncing baby girl. After two Princes this family was going to have a Princess.

Everything began to progress normally and we were breathing a sigh of relief. There was nothing wrong with our little girl she was growing right on schedule. I, however, started to have my migraines returning in full force and my hands and legs were numb again. The doctors told me that because I was pregnant that my CSF fluid was rising to 700 which is normal for a "normal" woman but in someone with Chiari it was precarious at best. At 28 weeks I went into preterm labor. We got to L&D and they dosed me with Tributaline(spelling?). My contractions stopped and they put me on bed rest for the rest of my pregnancy along with meds to keep from contracting. I got to see my Princess again at 34 weeks when we went to Stork Vision of Abilene.

Isn't she so pretty. I spoke with more doctors and they came to a consensous that because there is a risk of suction on the brainstem with an epidural that I would not be getting one. If I needed a C-Section I would be knocked out. So I went on the hunt for a doula to help me with labor. I found Doula's of Abilene. Her name is Sarah Shaver and she was the best person I could have hired. She was there through everything with me. They also wanted to take our little girl early due to my having to push her out would cause even more pressure in my head. They didn't want her to get to big. So on May 27th 2011 I was induced with pitocin at 9 a.m. 

I labored NATURALLY until my baby girl made her grand entrance into this world at 4:27 p.m. on 5/27/11 weighing in at 6 lbs 10 oz and 18 inches long. She was completely perfect.

Her name is Madalynn Kate
In the year since her birth things have been up and down hill and I have been told by my nuerosugeon that I have been decompressed and he can no longer help me. I was sent back to my neurologist to be put on a pain management schedule and so far some meds work and some don't. But hey I will take what I can get.

I promise to update more now and will keep everyone informed of how I am doing.
Thanks again everyone
Tiffany